End Notes: Hospice is not giving up

Wednesday

Dec 25, 2013 at 12:01 AM

Dr. Amy Clarkson

When we live in a performance driven, achievement rewarded, and success valued society, it only makes sense that endurance would be applauded. Those are the stories we like to retell; the odds were against him but he never gave up. She could have walked away, but she hung in there and overcame adversity.

The antonym to enduring would be to give up. Giving up is an unpleasant word. It indicates a resignation to failure or surrender to something more powerful than us. Surrounding its meaning is the idea of abandonment, which frankly I think all of us dread.

These negative connotations associated with giving up are precisely why I cringe when I hear families and even health care workers use the term "giving up" in relation to end of life issues.

"We can't just give up on Mom" an adult child will say outside of the ICU room of their ailing parent. The implications in such a statement are powerful, as it indicates a very black and white view of success. The line drawn with these words is that of life and death. Meaning life is the victory, no matter how grave, debilitated, miserable, or full of suffering it is.

When this is the goal, not quality of time, but quantity of time, then it is easy to see how the language of giving up can be used for anything that doesn't contribute to the potential of added days.

What if this view of life at all cost, however, is not what the patient hopes for? While culturally, we have a difficult time discussing these ideas with our friends and families, it is something I have the privilege of doing daily.

The common sentiment I run into is that what most hope for at the end of life is the best quality of time they can have. They don't want things done to them if it doesn't add to better days. They don't want to suffer and linger in debilitated states.

With this in mind, then, when a health crisis presents itself, especially in someone with a progressive disease, the idea of focusing on quality and comfort over death delaying therapies is not at all "giving up." Indeed, it is not a failure to honor someone's wishes, and more crucially it is not a failure to die.

If death is failure, I hate to tell you this; we are all going to be big failures one day. Focusing on comfort is not passive, it's not abandonment. Healthcare workers don't just walk away, but instead are very aggressive in taking care of patients. The difference of course is the focus of care; symptoms over disease.

You could even argue that if a patient hopes for the least amount of suffering possible with an end stage disease, that by continually intervening in that diseases natural progression, that this is the true giving up, by way of giving up on the patient's own wishes and desires.

It all comes back to the definition of success. Let's be sure we know what the hopes are before we speak of giving up.